Our youngest daughter, Gianna, struggled with low weight as a premature baby. To help her with weight gain at almost six months of age we decided to try a few tastes of seemingly safe foods like oats and avocado. Due to a history of food allergies in our family, we approached solid foods with caution.
We started with oats and within two hours she was ill. My first thought was that her gut just wasn’t quite ready for solid food, so we decided to put a hold on solids for a month. One month later, we tried again with avocado and all went well. We continued to proceed very slowly as we introduced new foods.
At ten months old Gianna was doing great with the handful of mashed up foods we had offered her over the past months. Bananas were a top favorite followed by peas. We decided to give oats another try. Within two hours Gigi began extreme vomiting followed with death like lethargy and a racing heartbeat. She had no color to her face, she would nurse, but her body would quickly expel the milk. She couldn’t hold her head up and her eyes were glassy. It was when her lips turned purple that I fearfully exclaimed we needed to rush to the hospital.
At the time we lived just five minutes from the hospital, but the drive there felt like five hours. Gigi continued to vomit even though her little tummy was empty at this point. I prayed during the entire drive. Brent dropped us off at the emergency room door and I ran her into the hospital. The waiting room wasn’t too full, but we were told we needed to wait.
Wait! How could they make us wait? She wasn’t moving, her lips are purple and her heart rate was higher than it should be. My baby girl lay in my arms looking like death was taking over, but they made us wait. And wait. And wait.
After finally being seen the nurses and doctors began moving much quicker. The concern that washed over the nurse’s face as she examined our baby filled the room with fear. We were moved to another room and the doctor came right in. He held her up, but her head just fell limp to one side and she starred back with glassy eyes. As her arms dangled and her feet hung my heart sank and my eyes welled over with tears.
Fear overwhelmed me. I prayed and cried as I held my baby girl. My husband and I had already experienced a number of miscarriages over the course of eight years. When we discovered we had a little one that would likely make it to term we were over the moon. Now we sit in this cold hospital room holding her and praying over her while battling the fear of losing her.
The nurses entered our room to complete a number of tests on our sweet girl. Gianna screamed in fear and pain as they inserted the catheter and IV. Neither of the nurses were experienced with these procedures on a pediatric patient. After what felt like torture to my baby they were finished and left the room. I scooped her up before the door latched and held her as close as possible. I sang to her and Brent prayed over her while rocking her in my arms.
Thoughts swarmed disorganized inside my head. Would this be the last time I hold her? What is wrong with her? Will the doctors be able to help her? Should we try to go to a better hospital? I thought about the friends who have lost their babies and older children. Fear was starting to win over my thoughts.
I knew in those moments the biblical truths, the Sunday-school answers, but I also knew what I was feeling. I think if someone had come into the room and told me to just trust Jesus more I might have gone a bit Xena Warrior Princess on them. I would likely tell them that I know Jesus is here and I know that this is not outside of His will. I’d want them to know that I’m not questioning His sovereignty. I would tell them that I am terrified and I need the God of all comfort to scoop me up and hold me tight in His arms.
Thankfully, the IV and medication helped Gianna to regain hydration and stop her vomiting. The doctors sent us home telling us to keep a close eye on her and that they didn’t know what caused this episode. The lack of information was disheartening.
After some intense research and talking with her regular pediatrician we came to discover that Gigi has a rare food allergy called Food Protein-Induced Enterocolitis Syndrome or FPIES for short. So what is FPIES? You can read all about it here. In short, Gigi is considered allergic to all foods until she has passed a food trial which takes place over the course of 5-14 days.
With oats, Gianna experienced an anaphylactic response. Now we are armed with epi-pens for her in the event she accidentally encounters oats or another food she is allergic to. The allergies don’t show up in blood tests so each food has to be tested by eating a small amount each day increasing the quantity until a full portion has been successfully passed.
During these food trials, we watch for a number of symptoms such as vomiting, hives, abnormal stools, behavior changes, sleep changes, and lethargy. Each time we try a new food, flashes from Gigi’s oats disaster come flooding back and I have to fight off the fear. It would be easy to avoid food trials and stick with the foods that are already found to be safe, but that wouldn’t be good for Gigi. With FPIES, even safe foods can suddenly become allergens.
At just over two years old Gianna has been blessed with a number of safe foods, although we have encountered some she is allergic to. Admittedly, out of fear we have been avoiding wheat and other such grains. This week though, for Gigi, we have decided to take our fears and plow through them. Gianna is now on day four of her wheat trial. My nerves have been on edge all week as we watch and wait. So far she is doing great! This makes my mama heart happy.
If she passes wheat not only will feeding her become a thousand times easier, but she will be able to play with play-dough and make cookies with us! If she passes wheat we will move onto other grains like barley, spelt, and millet as those are common in processed foods like bread.
Think for a moment how terrifying it would be to walk into a room full of food knowing your child could have an anaphylactic response to any of the foods in that room? Would you avoid going places where food is involved? For her safety, Gianna doesn’t go into the nursery at church, but we don’t otherwise avoid interactions with people. That would be letting the fear win.
Does it mean we aren’t a bit cautious or afraid when we enter a friend’s home for dinner? We absolutely deal with fear, but we have to choose to walk through it when necessary. It is not only good for Gigi, but it is good for our family, and it builds our faith.
God tells us not to be afraid, but He knows that we are. He doesn’t leave us to sit in our fear. He steps into it with us to bring us out of it. This week I have fear for the life and wellbeing of my child, but I’m not going to let the fear consume me. I do trust that God is sovereign and our children belong to Him. I also know that God has already chosen the day He will call each one of us to leave this earth.
So what do we do? We move forward the best that we can, knowing God already has a plan and sometimes there is pain as we walk the path laid before us. We choose to trust that God will carry us through. We use the tools God has given us to fulfill our responsibilities within the situation. We remind ourselves that trying harder to ward off fear is fruitless apart from Christ.
Understanding that God is the only way we can move beyond fear is vital. We take steps through the tears and through the joy. We keep going knowing that when we encounter fear, God is right there with us to give us His strength, which draws us out of the darkness.
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10
***In part two, Pursuing Hope, we look at fear within scripture.***